Journal entry by Chloe R. —
Hello everyone!
A few of you have been asking for an update on my scope. I finally have results in from the biopsies that were taken. As far as MCAS, my results were borderline, which according to my GI doctor, is not typical of MCAS. He requested that I get in contact with my allergist as well regarding the matter. It doesn't necessarily rule MCAS out, but it doesn't give us the concrete answer and directions we were hoping for. This isn't surprising as MCAS is very tricky to diagnose. A lot of people with it finally get lucky after sometimes years of repeat testing. Other biopsies for H. Pylori, SIBO, and Giardia were negative as well. "Structurally" speaking, I'm fine which has been the weirdest part of this whole journey given my GI and allergic reactions. I'm very grateful, but also puzzled. So, we are yet again back to the drawing board.
On a positive note, my allergist will be testing me for something called systemic contact dermatitis at the end of August. This is difficult to explain as I am still trying to understand it myself. I will put a link at the end of this post. I had a really good appointment with her this last week and she is just as frustrated as I am that I'm not responding better to conventional antihistamines and other therapy. At the beginning of my journey, I was on a $2,000 monthly injection (before insurance) to literally block allergic reactions from happening in my body. After several months of treatment, it did absolutely nothing for me when I needed it to work the most. Needless to say, it is challenging for my doctors to find something that helps me when I don't respond well to medication and we can't get to the root of the cause. If you could please pray for that appointment to be moved up, I'd appreciate it. Due to Covid, they are having issues shipping the materials for this test in a timely manner.
Similarly, I have no updates on tilt table testing for "POTS" as my doctors are currently struggling with health care management to get the part replaced. My neurologist warned the administration that the blood pressure cuff on the testing needed to be replaced and that they company that makes them for the Tilt table test was going to stop manufacturing them. Due to lack of concern from the administration (on top of Covid), the part was not replaced and they are struggling to get another cuff in a timely manner. My neurologist called Froedert and asked if some of her patients could receive the testing there as so many of us have waited for so long. Because of the current pandemic, they are 6 months behind and were not able to accommodate us. Froedert is the only other facility in the state besides the one I go to that offers this testing for patients with autonomic dysfunction. I will be writing a letter to administration in hopes to help my doctors further their quest on getting a replacement part. In the mean time, it feels good to know I finally have doctors fighting for me and for so many people like me who just want to feel well again.
Finally, we are working to scheduling my cancer surgery. This is also complicated by Covid. I will be getting skin tested before my surgery to ensure that I am not going to have a reaction to any anesthesia or medications they will be giving me.
Tim and I could use prayers for patience and perseverance. God is having us wait and we aren't strangers to that game. I get asked a lot if I am prepared to not receive a diagnosis, to not have a positive test result. To make sure that I'm not getting my hopes up. For Jesus to never reveal what is wrong. Although I'm not sure if we are every really prepared for anything, I find us being more so for not having answers as we haven't received a lot of insight on my situation the past two years. It doesn't make it hurt any less, but coming up empty handed isn't new. Many of you ask how you can support me and feel it is hard to know how to help me, especially during this very weird time for us all. So if you've been asking, this one is for you. I need people on my team who are as excited and hopeful that there will be an answer as me. I don't know what this journey is going to look like moving forward, but I know when I focus on "never" receiving any answers and all the ones we haven't received, I become depressed and tend not to want to push on to where God might be calling me. I tend to not want to trust him because I don't believe he'll make me well. I stop climbing with him. In my mind, I have already decided that healing isn't a possibility when I focus on "never." So what could Jesus do if my situation is already permanent? In turn, if I focus on the hope that only Jesus can bring and the infinite possibilities that exist through him alone, I find myself more equipped to press onward because of the strength he gives to me. Please don't misunderstand me when I say these things as I am not denying my health realities. "Reality" and I are well acquainted. So acquainted, my face has literally hit the floor with it. Instead, I ask you to petition for healing on my behalf and actually believe that we will receive answers. Jesus tells us to ask and we WILL receive. Seek and we WILL find. Knock and the door WILL be opened to us. These promises keep me going and I believe that eventually, a door WILL open. I am thankful that God keeps his promises even when I don't. That he doesn't say "Ask and perhaps you'll receive, depends on my mood" or "If you do this one thing for me, I suppose I can answer you." I believe one day, the door WILL open and it will be so clear to us who is standing on the other side. In the mean time, I need you to believe it with me.
More to come,
Chloe
Matthew 7:7 (NIV)- "Ask and it will be given to you; seek and you will find; knock and the door will be opened to you."
Matthew 17:20 (NLT)- "You don’t have enough faith,” Jesus told them. “I tell you the truth, if you had faith even as small as a mustard seed, you could say to this mountain, ‘Move from here to there,’ and it would move. Nothing would be impossible.”
What is Systemic Contact Dermatitis?
https://dermnetnz.org/topics/systemic-contact-dermatitis/
A few of you have been asking for an update on my scope. I finally have results in from the biopsies that were taken. As far as MCAS, my results were borderline, which according to my GI doctor, is not typical of MCAS. He requested that I get in contact with my allergist as well regarding the matter. It doesn't necessarily rule MCAS out, but it doesn't give us the concrete answer and directions we were hoping for. This isn't surprising as MCAS is very tricky to diagnose. A lot of people with it finally get lucky after sometimes years of repeat testing. Other biopsies for H. Pylori, SIBO, and Giardia were negative as well. "Structurally" speaking, I'm fine which has been the weirdest part of this whole journey given my GI and allergic reactions. I'm very grateful, but also puzzled. So, we are yet again back to the drawing board.
On a positive note, my allergist will be testing me for something called systemic contact dermatitis at the end of August. This is difficult to explain as I am still trying to understand it myself. I will put a link at the end of this post. I had a really good appointment with her this last week and she is just as frustrated as I am that I'm not responding better to conventional antihistamines and other therapy. At the beginning of my journey, I was on a $2,000 monthly injection (before insurance) to literally block allergic reactions from happening in my body. After several months of treatment, it did absolutely nothing for me when I needed it to work the most. Needless to say, it is challenging for my doctors to find something that helps me when I don't respond well to medication and we can't get to the root of the cause. If you could please pray for that appointment to be moved up, I'd appreciate it. Due to Covid, they are having issues shipping the materials for this test in a timely manner.
Similarly, I have no updates on tilt table testing for "POTS" as my doctors are currently struggling with health care management to get the part replaced. My neurologist warned the administration that the blood pressure cuff on the testing needed to be replaced and that they company that makes them for the Tilt table test was going to stop manufacturing them. Due to lack of concern from the administration (on top of Covid), the part was not replaced and they are struggling to get another cuff in a timely manner. My neurologist called Froedert and asked if some of her patients could receive the testing there as so many of us have waited for so long. Because of the current pandemic, they are 6 months behind and were not able to accommodate us. Froedert is the only other facility in the state besides the one I go to that offers this testing for patients with autonomic dysfunction. I will be writing a letter to administration in hopes to help my doctors further their quest on getting a replacement part. In the mean time, it feels good to know I finally have doctors fighting for me and for so many people like me who just want to feel well again.
Finally, we are working to scheduling my cancer surgery. This is also complicated by Covid. I will be getting skin tested before my surgery to ensure that I am not going to have a reaction to any anesthesia or medications they will be giving me.
Tim and I could use prayers for patience and perseverance. God is having us wait and we aren't strangers to that game. I get asked a lot if I am prepared to not receive a diagnosis, to not have a positive test result. To make sure that I'm not getting my hopes up. For Jesus to never reveal what is wrong. Although I'm not sure if we are every really prepared for anything, I find us being more so for not having answers as we haven't received a lot of insight on my situation the past two years. It doesn't make it hurt any less, but coming up empty handed isn't new. Many of you ask how you can support me and feel it is hard to know how to help me, especially during this very weird time for us all. So if you've been asking, this one is for you. I need people on my team who are as excited and hopeful that there will be an answer as me. I don't know what this journey is going to look like moving forward, but I know when I focus on "never" receiving any answers and all the ones we haven't received, I become depressed and tend not to want to push on to where God might be calling me. I tend to not want to trust him because I don't believe he'll make me well. I stop climbing with him. In my mind, I have already decided that healing isn't a possibility when I focus on "never." So what could Jesus do if my situation is already permanent? In turn, if I focus on the hope that only Jesus can bring and the infinite possibilities that exist through him alone, I find myself more equipped to press onward because of the strength he gives to me. Please don't misunderstand me when I say these things as I am not denying my health realities. "Reality" and I are well acquainted. So acquainted, my face has literally hit the floor with it. Instead, I ask you to petition for healing on my behalf and actually believe that we will receive answers. Jesus tells us to ask and we WILL receive. Seek and we WILL find. Knock and the door WILL be opened to us. These promises keep me going and I believe that eventually, a door WILL open. I am thankful that God keeps his promises even when I don't. That he doesn't say "Ask and perhaps you'll receive, depends on my mood" or "If you do this one thing for me, I suppose I can answer you." I believe one day, the door WILL open and it will be so clear to us who is standing on the other side. In the mean time, I need you to believe it with me.
More to come,
Chloe
Matthew 7:7 (NIV)- "Ask and it will be given to you; seek and you will find; knock and the door will be opened to you."
Matthew 17:20 (NLT)- "You don’t have enough faith,” Jesus told them. “I tell you the truth, if you had faith even as small as a mustard seed, you could say to this mountain, ‘Move from here to there,’ and it would move. Nothing would be impossible.”
What is Systemic Contact Dermatitis?
https://dermnetnz.org/topics/systemic-contact-dermatitis/
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